We are glad to announce that our MetabERN Coordinator, Professor Maurizio Scarpa, has been recently invited to speak at an event that Genetic Alliance UK, the charity supporting all those affected by rare, genetic and undiagnosed conditions, hold on Monday 9 July.
The European Commission adopted a legislative proposal for a new European Social Fund Plus (ESF+) Programme in May 2018, based on the proposed Multiannual Financial Framework for the period 2021-2027.
Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families.
Washington, D.C., May 24, 2018 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, announces the availability of new research grants to support the study of eight rare diseases. The initial application deadline is July 16, 2018.
The members of the “conect4children” (c4c) initiative today announced the start of a large collaborative paediatric network that will facilitate the development of new drugs and other therapies for the entire paediatric population in Europe.
Chafea organised a kick-off meeting for five new rare diseases’ registries in Luxembourg on the 17th of April 2018, which involved 40 participants.
The computer networks are up and running and rare disease patients are starting to enter their data. A year after their launch, the European Reference Networks are looking ahead to what it will take to truly perform their mission
As MetabERN aims to promote prevention, accelerate diagnosis and improve standards of care across Europe for patients living with Inherited Metabolic Disorders, MetabERN considers the correct laboratory diagnosis as a key factor for successful management of patients.
On the occasion of Rare Diseases Day, on 28 February 2018, the European Reference Network for Rare Bone Disorders (ERN-BOND) coordinated by Luca Sangiorgi (IT), with the kind support of EURORDIS, organized a European Parliamentary Meeting entitled: European Reference Networks – Accelerating and Improving Diagnosis for Rare Diseases Patients.
As Coordinators of the 24 European Reference Networks (ERNs), we stand together and united with our 900 strong members (healthcare providers) and the patient community, in the fight against rare diseases.